Fibrolamellar Patient & Research Summit - Patient Survey

Thank you for agreeing to attend FCF’s second Patient & Research Summit! We want this to be a collaborative working session, where fibrolamellar patients, caregivers, clinicians and researchers discuss important research topics, and identify opportunities to improve and accelerate fibrolamellar research activities.

To help make the event as productive as possible, please take a few minutes to complete the following survey. The survey has several objectives:

Providing basic background information about attendees that will be included in the event program
Identifying specific questions the group would like addressed during the meeting sessions
Assessing participation levels in research initiatives and obstacles to broader participation
Outlining participants’ need for additional information about research and treatment options
Understanding potential ideas for community improvement.

We’ll summarize and share the aggregated results with everyone at the meeting. Any specific responses will not be attributed to any individual.

"*" indicates required fields

Background information (to be included in event program)

Name*

First Last

I am a …*

Patient

Active caregiver

Former caregiver

Other

My location*

City State / Province / Region Country

Patient age at diagnosis*

Year of diagnosis*

Year of patient's death

Patient treatments to date*

None

Liver resection

Liver transplant

Other surgery for metastases

Chemotherapy/targeted therapy

Immunotherapy

Interventional radiology

Radiation

Other

If other, please specify

Barrier identification (this and subsequent answers will not be attributed if shared)

Sometimes people experience situations related to the diagnosis, management or treatment of their disease that have felt difficult or frustrating. These are often called “barriers”. Reflecting on your own situation, please describe your MOST SIGNIFICANT barrier that you have experienced. Please be as specific as possible. (If there are none, please note “none”):

Please describe your second most significant barrier:

Please describe your third most significant barrier:

Meeting goals

How will you decide whether or not this has been a successful meeting?

Specific questions (to be addressed in the research and panel discussions)

What questions about current research efforts would you like to see answered at the meeting?

What questions about patient and caregiver experiences would you like to be addressed by the patient panels?

What questions about immunotherapy would you like to see answered by a panel of leading immunotherapy clinicians and researchers?

What questions about interventional radiology (IR) and local therapies would you like to see answered by a panel of IR specialists?

What questions about systemic treatment (chemotherapy, targeted therapies) and precision medicine would you like to see answered by a panel of medical oncologists?

Treatment and research information

How satisfied are you with the current availability of information about FLC treatment options?

	Very dissatisfied	Somewhat dissatisfied	Neutral	Somewhat satisfied	Very satisfied	Don’t know
Availability of information about potential treatment options
Level of detail of information about potential treatment options
Thoroughness of information available

What suggestions do you have for improving the usefulness of treatment information?

How satisfied are you with the current availability of information about FLC research efforts?

	Very dissatisfied	Somewhat dissatisfied	Neutral	Somewhat satisfied	Very satisfied	Don’t know
Availability of information about research efforts
Level of detail of information about research efforts
Thoroughness of information available

What suggestions do you have for improving the usefulness of information about FLC research?

Involvement in research efforts

How important do you believe direct patient/caregiver participation is to fibrolamellar research?*

	Not at all important	Low importance	Neutral	Important	Very important	Don’t know
Tissue donation
Clinical trials
Data registries
Clinical trial and patient study design
Review of research proposals
Research roadmapping activities

In what specific areas do you think more patient/caregiver input would be important or helpful?

What specific research programs have you or your patient participated in (check all that apply)?*

Tumor tissue or ascites fluid donation (to any institution)

Clinical trial

Patient data registry

Natural history study

Research proposal review programs (including those of FCF or the Department of Defense)

None to date

Other

What type of tissue donation was made?

Tumor tissue

Ascites fluid

How satisfied were you with the tissue donation process?

What improvements could be made in the tissue donation process?

Which clinical trial or trials did you/your patient participate in?

If "other" what was the trial?

How important were the following factors to your decision to participate in the clinical trial(s)?

	Not at all important	Low importance	Neutral	Important	Very important
Potential personal benefit of treatment
Perceived higher level of care/follow-up
Trial did not involve any extra costs
Trial did not involve any extra effort
Few other treatment options were available
Potential benefit to other patients or medical research from knowledge
Reputation of sponsoring institution
Trust in clinical trial staff
Doctor recommenda- tion
Family influence or encourage- ment

How satisfied were you with your experience during the clinical trial (irrespective of the treatment results)?

Please indicate the patient registries that you have participated in.

The Fibrolamellar Registry

xCures

The Fibrolamellar Project

Other

Are you still actively participating/providing data to a patient registry?

Yes

How well did your patient registry experience meet your expectations?

How important were the following factors to your participation in the registry?

	Not at all important	Low importance	Neutral	Important	Very important
Information feedback from participation
Helping other patients or advancing medical research
Reputation of sponsoring institution
Doctor recommenda- tion
Family influence or encourage- ment

Please indicate the Natural History Studies you have participated in

NCI/MyPART Natural History Study of Rare Solid Tumors

Other

How important were the following factors to your participation in the natural history study?

	Not at all important	Low importance	Neutral	Important	Very important
Obtaining free healthcare
Getting access to additional diagnostics (e.g genomic testing)
Getting treatment perspective of sponsoring clinicians
Helping other patients or advancing medical research
Reputation of sponsoring institution
Doctor recommenda- tion
Family influence or encourage- ment

Please indicate the research review programs you have participated in

The Department of Defense’s Peer Reviewed Cancer Program (PRCP)

The Department of Defense’s Rare Cancer Research Program (RCRP)

FCF’s grant review program

Other

If other, please specify

How satisfied were you with your experience with the research review program?

What factors drove your desire to participate in the research review program(s)?

Obstacles to participation in research activities

How important were the following factors in your decision to NOT donate tissue or ascites fluid to research?

	Not at all important	Low importance	Neutral	Important	Very important
Lack of awareness of opportunity to donate
Process too cumbersome
Difficulty of considering donation when facing surgery or treatment challenges
Privacy concerns

How important were the following factors in your decision to NOT participate in a clinical trial so far?

	Not at all important	Low importance	Neutral	Important	Very important
Trial treatment not appropriate for my/my patient’s situation
Lack of awareness of trial opportunity
Location inaccessible or inconvenient
Time commitment too high
Perceived risk too high
Did not or would not qualify
Clinician advice to pursue alternative treatments
Privacy concerns

How important were the following factors in your decision NOT to participate in any registry or natural history study initiatives to date?

	Not at all important	Low importance	Neutral	Important	Very important
Lack of awareness of participation opportunity
Belief that my personal participation is not essential
Too much work required of me
Difficulty committing time when dealing with cancer treatment challenges
Lack of clarity on how and where the data is used
Belief that effort provides little direct benefit to me
Privacy concerns

How important were the following factors in your decision to NOT participate in a research review program?

	Not at all important	Low importance	Neutral	Important	Very important
Lack of awareness of opportunity to serve as a consumer reviewer
Concern that my skills or perspective are not appropriate for a research reviewer position
Time commitment required given treatment challenges